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EYE WITNESS OPINION
FROM THE JUDICIAL REVIEW
11th and 12th
February 2009 |
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(This
can also be opened as a Word file for easier reading &
printing by clicking
HERE
)
Hello there,
I got back
home on Saturday after a 9 hour journey to South Ayrshire. I
took a train from Kings Cross to Glasgow via Edinburgh that
left at 11am.
The train had no air conditioning and the
heating was full on and the carriage was loaded with children
one of whom kicked my shins roughly every 2 minutes and could
only communicate via shouting.
And my personal stereo
failed on me for the whole return trip home so things could
not have been much worse.
I got home at around 7pm to
find Mum had been taken ill with a cold and cough.
So,
I am not up to writing much but I just wanted to say thanks to
Kev and Doug and to Jamie and Jeremy for what must have been
an incredibly difficult two days.
And it was excellent
to see so many people come along to support the case over
those two days. All those who came dwarfed the representatives
from NICE. Mid morning on Day One there were no chairs left
and the court was declared full.
I had a serious
headache brewing for Day One and a full blown flashing lights
migraine for nearly all of Day Two so I spent pretty well all
of my time either staring at a grubby carpet or with my eyes
closed. So I wasn't able to take notes but I could see others
were but then this has always been about teamwork so I knew
we'd have reports and reviews coming in here when I got
home.
Having said that it was all compelling listening
and I am really glad I made the effort to attend.
If
the Judicial Review I sat through had been the Grand National
then I'd have to say that our side tried very hard but it
appeared to myself and others that something was not right
especially as the afternoon session of Day One took place.
Jeremy the claimants barrister just wasn't firing on all
cylinders from what I heard.
It was like a horse you'd
seen being specially trained over a period of many months - a
horse you knew had won many hard races before yours and a
horse that on the day was showing poor form.
But then
every time I managed to look at the Judge I was looking at a
stuffy member of "The Establishment" who seemed to find it all
very distasteful.
And as our side were trying to
challenge "The Establishment", it seemed to me that this
Judicial Review was not going to be allowed to
succeed.
But - at the very least - this Judicial Review
was a shot across the bows of "The Establishment" and the
result of all the hard work that has been put in over many
many months is that there is a whole cupboard full of evidence
all set out in black and white and in context.
This is
evidence that can be used again elsewhere.
My guess is
that if a miracle does not happen then the Judge will simply
ask for a statutory review of NICE Guideline 53 which they
said was due in six months anyway.
And this of course
will change nothing because those that in my view rigged the
GDG to force an exclusive CBT/GET outcome will just rearrange
the chairs on their own lucrative Titanic.
So as some
are mentioning already, perhaps our best course of action
would be to somehow approach the European Court of Human
Rights.
There is no doubt that in my view it is simply
wrong that drugs such as Gabapentin are being denied because
the NICE Guideline does not allow this drug to be used when I
know that those few being offered it locally are benefiting
from it.
I wish I'd heard the assertions about the
heterogeneous nature of "CFS/ME" as stated by the GWP Report
of 2002 and that this was why the drugs worked for some and
not for others.
I wish I'd heard it clearly stated that
all the RCT's that were said by the NICE defence to be
exemplary were in fact all seriously flawed because they did
not include the 25% severely affected. In fact the GDG paid so
little attention to those severely affected that from my view
it was fatally flawed on that score alone.
When the
defence barrister claimed that there was no diagnostic marker
for "CFS/ME" there was a really needed break in the silence
from the audience at the back. Many of us laughed or coughed
and we were warned by the Judge that if it happened again we'd
be asked to leave.
But the Judge didn't mind later on
when some of us laughed at his own "humorous" quips so I think
that showed to me that there was an issue of bias going on up
in the high chair.
And there was a slip at the very end
when the Judge read a piece of paper regarding the WHO
classifications and he stated clearly that
the
classification of "CFS/ME" was contentious when none of
what we thought he had seen would say this. So - what had he
already been told and by whom?
I shall not forget
seeing Jamie Beagent on the phone during the lunch break on
the second day. He looked really worried - under stress and I
had by that time thought something was very wrong.
One
last thing, it also struck me that whilst the NICE defence had
managed to outclass the claimants legal team, they had not
really prepared for "the mouse that roared" during the final
Act on the second day.
The barrister for the
"interested party BB" had been dealt with as an afterthought
by the NICE defence. Their best attack was to try to dismiss
his evidence because he had no standing in Court and that he
had no sanction to speak and that his client had no viable
interest.
But this was all swept away by the barrister
for BB with legal argument and a bit of help from
Jeremy.
Once BB's barrister was allowed to get to the
meat of his argument, his confidence grew and things
definitely took a turn for the better - so much so that the
whole day over ran by an hour and fifteen minutes from the
original 4pm close.
I saw one of the men on the NICE
defence table at the back of the room looking red faced and
very angry when it was revealed that the cost benefit (QUALY)
issues were completely wide open to quite scandalous
criticism.
And indeed the barrister working for NICE
also dropped an almost constant smile during that final act so
at least there was a final punch that will be difficult to
ignore. Thanks to how things turned out, the barrister for BB
managed to fire a direct shot under the NICE radar which will
obviously be an inconvenience for the Judge who now cannot
dismiss the stand alone issue of neglecting to fully account
for the considerable costs of implementing CBT and GET on a
potentially infinite basis.
Mr Bear the NICE (sic)
barrister when making all his claims about the "exemplary"
Random Control Trials and any other "best available evidence"
to support CBT and GET only ever claimed that the benefits of
CBT and GET were "short term" which means of course the
considerable expense involved in training and employing
multidisciplinary teams who will have a never ending job
"managing" or even dare I say exploiting the existing patient
community also known as "the victims of Guideline
53."
Those "victims" of Guideline 53 being subjected to
such interventions as they were described will have to return
time and again for these courses of CBT and GET because there
was and is no evidence of a long term cure or even a long term
remission using the interventions promoted by Guideline 53 as
outlined at the Judicial Review Hearing.
What was
described in that last 2 hours makes this Guideline 53 look
incredibly expensive and totally extravagant as well as
inadequate but then this was always about building a mental
health CBT based industry and finding a vulnerable patient
base to keep all these multidisciplinary pseudo "specialists"
in employment - wasn't it?
And whilst patients with
"CFS/ME" find themselves in a never-ending loop of CBT and GET
- Guideline 53 does not provide any other treatment options to
help patients get themselves off the psychosocial gravy
train.
The more severely affected patients find
themselves the less likely patients are to be able to get out
of the psychosocial loop.
As ever - sod the patients
and more so those severely affected.
Unless of course
patients just turn around and say "No" and write a written
complaint to the relevant authorities stating why backed up
with some of the useful evidence we heard at the Judicial
Review.
Perhaps we could put a pro-forma letter
together and put it on the website as a means for patients to
protest..
Anyway - it was really excellent meeting
people I'd been in touch with for many years but as I was
feeling pretty rough I didn't get to meet as many people as I
had wanted to.
I hope we will all meet again some day
for another battle.
Next time the battle will surely
have to be fought through a Court that sits outside of the
British judicial system so that at least our case can be heard
clearly, objectively and without any back room
"doping".
I am absolutely shattered after this past
week.
This time last Tuesday I was on a second train
heading south from Glasgow and since then I have covered
almost a thousand miles.
So I'm going to need a while
to recover.
THE
END
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NOTES
& REPORTS
ON DAY 1 & DAY 2
OF THE JUDICIAL REVIEW
11th and 12th
February 2009 |
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WHAT
DID
NICE ARGUE IN
COURT? These notes were written by a person with
ME at the JR. They are sure to contain inaccuracies due to all
the obvious factors (a disabled person taking the notes, problems
with writing/hearing etc)
Here is a taster of quotes
(
which
will be out of context of course, so please read the full
document in the
NOTES page as well)
Mr Bear, QC
hired by NICE said
"The GDG wrote a
list of things of interest and asked for data on trials to be
found for them.
The validity assessors could not find any
RCT’s on pharmacological therapies"
"this showed how much better behavioural
trials are"
“Insurance companies do not have an
interest in the interests of the Psycho-Social model”.
”People who go on to
develop CFS visit their doctors more than “normal””.
“There is no
physical way of diagnosing ME, no physical signs”.
"They(the
claimants)
say that the GDG members were unwilling
to approach the evidence with an open mind and were waiting to
push their theories."
The
claimants say that this was a “reasonable perception”. I say “
it is a preposterous conspiracy theory”
Read more from
the NOTES page by clicking HERE
DAY ONE
NOTES by M&JW
DAY 2
Part 1 by M&JW
DAY 2 Part 2 by
M&JW
DAY 2
Part 3 by M&JW
DAY 1
NOTES by Anon
DAY
2 NOTES by Anon
These links will open a Word
file and it may take 5-10 seconds depending on the speed of
your connection
Dr Shepherd from the
MEA was at the JR and has written a
summary
Read it from the MEA Website from this following
link MEA SUMMARY
The MEA also has a
summary of press reports of the JR on their
website
Use this link to take you to the MEA
website and see the reports
MEA PRESS
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"not-so-NICE"
"2 Days of Shame in
Court"
says one observer
by our Court Reporter
It was always going to be a David vs Goliath
court hearing.
NICE have almost unlimited resources. They
don’t have to worry about legal bills, sick and exhausted staff and
can afford to hire an expensive QC to plead their case in
court.
Anyone who attended this week could see the
imbalance. On one side and at the front of the court an entire
front bench given over to their Queens Council Mr Bear
(QC), the senior counsel hired by NICE to plead their case.
Behind him Mr Childs, the Barrister who represented them at the
initial hearing and then behind them the NICE legal team.
On the other side, brave but younger members of
the legal teams representing the people with ME. One of them taken
(as it was said in court) from a Pro-Bono Barristers
scheme.
There was no QC on the front bench representing
people with ME.
So given, the imbalance in power and their huge
legal and financial resources did NICE play fair and represent the
truth in court?
What do you think, were you there?
Send comments to the webmaster now
at
contact@nicemecourt.co.uk |
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Preliminary
Hearing
June
2008
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Notes from the earlier hearing
In June 2008 there was a preliminary
hearing for the case(s).
The link above opens a file in
Word
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Supporting Documents and
Evidence |
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These documents were written for the
Judge and Legal Team by
Margaret Williams
They may contain information that people
with ME have seen before.
They were written as possible background and
evidence for the Judicial Review.
Please use this link to the MEActionUK website to view
these files.
http://www.meactionuk.org.uk/nicejr.htm
last updated
2/3/09
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Youtube
video
Annette Barclay on
YouTube talking about what to expect in court and the case in
general
(this was recorded
before we had the court room location
confirmed)
http://www.youtube.com/watch?v=uojoJ07OktE
Earlier TV
Coverage
This is a link
to a YouTube video of a BBC Breakfast item on the NICE Guidelines.
This features Dr Shepherd, Dr Jarvis and Annette Barclay
(PWME)
http://uk.youtube.com/watch?v=0uUxL9My1bc
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